Caring for the Caregiver

The sixth and final chapter of Meet Me Where I Am: An Alzheimer’s Care Guide, may be the most important in the book. Titled “Caring for the Caregiver,” this chapter brings the book to a close with help, hope and peace of mind for those who love and care for someone with Alzheimer’s.

Editor’s Note: What follows is Chapter Six of Meet Me Where I Am: An Alzheimer’s Care Guide, by Mary Ann Drummond. Drummond, an Alzheimer’s care expert and licensed nurse, is Vice President of Operations at Carillon Assisted Living.

Each chapter of Drummond’s book has been released in serialized installments here on the Carillon web blog. This is the final chapter in the book.

Chapter 6:

Caring for the Caregiver

”What lies behind us, and what lies before us are tiny matters, compared to what lies within us.”

-Ralph Waldo Emerson

I wonder if Mr. Emerson might have been thinking of someone he knew who was memory impaired when he wrote the above passage, as it reflects so well what we need to remember regarding our loved ones with Alzheimer’s disease. We must always seek what “lies within” and bring out the best of whatever that is, making the most of the day at hand. Celebrating the good days are often all we have to give us courage to make it through the bad ones.

As a nurse, I have held many hands and wiped many tears throughout the years during times of grief and loss. By far, some of the hardest tears to wipe away have been tears of the ones “left behind” while their loved one progressed through the Alzheimer’s journey. The person they know and love looks normal and healthy on the outside but all of the things that made them who they were inside seem missing or changed. Some days they find a way to join their loved one in their journey while others they are left behind, feeling forgotten and alone.

Many times my own tears have fallen while working with family members and caregivers learning to cope with the loss that Alzheimer’s brings. I have had the opportunity to meet some very special people along the way who have touched my heart with their love and dedication. One of my favorites will always be Mrs. Green. She was the poster child for how therapeutic unconditional love, perseverance and understanding can be for someone suffering with Alzheimer’s disease. I know she is somewhere in heaven today with many stars in her crown.

Mr. Green was a resident of an assisted living community that specialized in Alzheimer’s care. He was in moderate to advanced stages and had reached a point in the disease process where he did not recognize many of his friends and family. He was still able to dress himself, and took great pride in his appearance, showing a preference for the styles popular in the 1930s. Every morning he would wake up with a youthful twinkle in his aging eyes, and quickly make himself ready for the day with anticipation that she would soon arrive. You see, he didn’t know that he was married any more, but he knew he had a sweetheart who came to see him every day.

Mrs. Green was so punctual you knew the minute you saw her each morning it was ten o’clock. With her silvery hair neatly curled, wearing a pearl necklace and matching earrings, she always looked beautiful and elegant. It was a joy to watch his eyes when he first saw her each day. He looked like a school boy staring at the most gorgeous girl he had ever seen. His cheeks blushed with rosy pink hues each time she took him by the hand and walked with him to the couch in the common area where they would sit for hours and talk and laugh. The really special part is how Mrs. Green managed to keep their love alive. She never tried to talk about their life together, their children or the things that he could no longer remember. Instead, she acted as though she was his “girl” who came to visit. They would take long walks holding hands, enjoying the garden or sharing an ice cream cone. All the while she knew he was working up his courage to “steel a kiss” from his sweetheart before she left. And he did, every day.

For nearly two years, the staff witnessed their courtship continue with the eagerness and innocence of “young love.” Once I asked her what it was like for her. She told me how her heart ached to hold the man she knew and loved as her husband, but she took comfort knowing she could still “catch his eye.” She shared with me the reason she always wore her pearls; he had given them to her long ago and always liked to see her wear them. Though there were many days she really did not feel like dressing up or putting on her makeup, she wanted to look her best for him. “Some days he thinks he’s meeting me for the first time, but he always seems to fall in love with me before the day is over. To tell you the truth, that’s not so bad!”

One Valentine’s Day the facility hosted a sweetheart ball. I happened to be there that day, and noticed Mr. Greene was sitting alone on the couch watching the doorway, likely looking for Mrs. Greene who had not yet arrived. The music was playing and the residents were having a wonderful time dancing with staff and family members. I asked him to dance with me and though hesitant at first he accepted my invitation. He was a graceful dancer and I complimented him on how well he danced. This made his soft cheeks blush, and I laughed while telling him once again what a great dancer he was, which proved to be a great mistake on my part. I failed to realize I wasn’t dancing with an 80 year old man with Alzheimer’s disease, but rather, I was dancing with a very young man whose self esteem was fragile. In no way did I intend to make him feel like I was laughing at him, but that is how he took it. He immediately stopped dancing, looked down at his feet with a confused and embarrassed expression, and left the party to go to his room.

About that time, Mrs. Greene arrived. I told her what had happened and expressed concern for the fact he had been upset. Putting her hand on mine she said with great confidence, “Don’t worry honey, his sweetheart is here now and I’ll have him out dancing up a storm!” She was right. Within minutes he was back on the dance floor, waltzing with his bride. The young man whose confidence was shaken earlier had completely recovered and his joy was obvious as he waltzed with the love of his life.

Two months later, tragedy struck and Mrs. Greene lost her life to a sudden illness. Mr. Greene waited each day for her to visit, watching the doorway and pacing slowly as evening fell. Over the next few days when she failed to show up, he was so grief stricken that he began sleeping in late, refusing to get dressed and lost all interest in participating in daily activities. The twinkle in his eye was gone. When he did come out of his room he would sit quietly on the sofa where they use to visit, staring at the wall as though watching something no one else could see. Though he had been highly functioning with no signs of end stage disease process previous to his wife’s passing, he joined her within a few short weeks thereafter.

I know that somewhere, Mr. and Mrs. Greene are together. She found a way to reach beyond the disease, and find the best of what was within her husband. She had learned how to “meet him where he was” and though it meant no longer being known to him as his wife, she found a place for her beside him.

There are so many reasons for family members and caregivers of Alzheimer’s patients to feel sadness, but perhaps none are as great as the pain of not being remembered. Some will know what it is like to be treated as a total stranger by the person they have shared their life and bed with for many years. Others will experience the heartbreak of having a beloved mother or father stare at them through empty eyes as though they aren’t even there. While not everyone who has Alzheimer’s disease will experience memory deficits to this degree, the majority will eventually have issues recognizing loved ones at some point.

Many years ago, when my Aunt Winnie was first diagnosed, she still knew who we were and welcomed our visits. She had always had a witty sense of humor and could easily make us laugh with the playful way she compensated for her memory loss. Our first challenge came when the police called, to let us know they needed someone to pick Aunt Winnie up from the station. We were shocked to learn she had caused over twenty traffic incidents in the past six months, including the event of the day where she drove off the road onto the sidewalk, hitting a bicyclist who was thankfully unharmed. She didn’t seem to mind when we took her driver’s license away, and even joked about how much fun it would be to be chauffeured around. As her disease progressed, she would often ask questions such as, “Now whose daughter are you?” or “Who did you marry?” For the most part she would still recognize those of us who were closest to her. She eventually reached a point that she could only remember her children. The rest of us had been forgotten.

Though it seemed the last three decades of her life were erased, she remembered with explicit detail the stories of her youth. You could ask her about a story regarding one of her and Granny’s “escapades” and she could tell you everything, including what they were wearing and who they were with. I loved to hear her tell the story about the day she and Granny had gone to the fair. They wanted new dresses to wear but could not afford them, so they made beautiful dresses out of crepe paper. They had a wonderful time until a rain storm came and ruined their beautiful skirts, washing the crepe paper away! Aunt Winnie giggled like a school girl each time she described how they had to walk home wearing nothing but their petty coats!

She was my favorite aunt and I remember feeling that she was lost to me. She didn’t know who I was. I remember trying to tell her that I was Sallie’s daughter, who was the daughter of her sister Delores. Inevitably she would think that I was my mother, and then there would be a few moments of joy in that she would at least converse with me and I would hear a hint of her old personality come through. I wish I knew then what I know now regarding reaching beyond the disease and finding the person I knew and loved deep inside. Granted, it might have been a younger version of Aunt Winnie that I found, but it still would have been that dear sweet woman that I missed so much.

The disease affects our ability to remember the recent past, but it does not completely take away our memory of our life experiences. Here’s an exercise that will help you to better understand this point. Think about everything that makes you who you are…the people in your life, your home, your job, etc. Now compare the “you” of today to who you were twenty years ago. It is likely there have been many life changes since that time. Now imagine all of your memories for the last twenty years have been erased. Someone who looks a lot like your father approaches you and tells you that he is your son. The place where you live is filled with pictures and mementos that seem familiar, but you cannot recall exactly where they came from. A man whom you are certain you have never seen before approaches you and gives you a kiss on the cheek. When you seem startled by his actions, he puts his hand on your shoulder and tells you, “Don’t be afraid, honey. It’s me, your husband.” This is a small snapshot of the day-in and day-out experience of the Alzheimer’s patient. Some family members have told me in moments of grief, “That woman is not my mother!” or “My husband is dead inside and all that is left is an empty shell!”

Because so much around them is unfamiliar, it is common for the person with Alzheimer’s to withdraw and loose interest in the world around them. The emotions of love and affection are often absent from visits with immediate family members because they just don’t recognize them, or they are told the person they are visiting with is not who they think they are. As children grow older, they often closely resemble other relatives in their younger years. A stranger may resemble a dear friend or family member from a time long past. Where most of us make our mistake is when we try to bring them into our place, time and reality. “No mother, I’m not your uncle Joe, I’m your son Matthew. Don’t you remember me?” or “Dad, it’s your daughter…why do you keep calling me Sara? Sara is your sister!” We do this because of our own pain and feelings of loss and a desire to be remembered for who we really are. Yet when we try to force them from the world they know and embrace, they become even more withdrawn and agitated.

Some caregivers have naturally grasped how important it is to ascertain where the patient’s view of the moment is, rather than assuming you are in the same place and time together. A young man by the name of Joel shared his story with me when I was helping to open an assisted living facility in Southport, North Carolina. Joel had no formal training but had learned what it meant to really meet his grandfather where he was at any given moment and it led to a rich relationship restored to him. I asked him to come and share his story with a class of new caregivers I was working with.

When Joel’s grandfather was diagnosed with dementia, he began documenting the “journey” via photography of his grandfather. Throughout the course of his project, Joel began to get to know his grandfather in a whole new dimension. He shared with our class how it used to grieve him deeply to spend time with his grandfather and not be recognized as his grandson any longer. Joel and his grandfather had been very close and he felt as though he had lost both a mentor and father figure. As time went on, something new and wonderful began to happen. Joel began getting to know his grandfather in a whole new light. Joel shared that, “I lost a grandpa, but I gained a friend.”

Joel would listen for hours as his grandfather told him all about his life as an immigrant who came to America to make a better life for his family. He never knew the feisty, streetwise young man that his grandpa introduced him to when they visited together, but he did recognize the emotion in his grandpa’s eyes when he thanked him for spending time with him, and for listening to his stories. It takes courage to reach beyond the familiarity of the relationship you shared with your loved one before they became ill. Some will never know the incredible pain associated with not being remembered, others will eventually relate to what it feels like to be forgotten. What we have to remember is that we are not completely lost to them if we find a way as Joel did to enter the time and place where they are very much alive and well.

For a husband, wife, sister, brother, son or daughter to interact with a loved one in a role other than what is real is difficult at best. Yet when a daughter is willing to accept her mother’s belief that she is actually her mother’s sister, the reward lies in knowing her mother is experiencing the warmth and comfort that comes from visiting with someone she loves and remembers. The joy experienced during such times is far more fulfilling than the emptiness and frustration brought on by trying to convince someone you are not the person they think you are. On special days, you may find that when you visit with her as her sister, she talks to you about her little girl, asking if she is all right and worrying if she has had her dinner yet. That’s when you feel the tears sting your eyes because you know it is you she is remembering. Continuing to be her sister, you take her hand and assure her that her daughter is safe and knows how much she cares.

When I was a young girl, my grandmother had a saying that provided comfort in times of trouble. She would put her arms around me and say, “This too shall pass.” Throughout the years, her words have continued to strengthen me when I needed it most. We develop many ways to manage life’s ups and downs, and help us find the light at the end of the tunnel. Still, there are times when something so horrific happens, all of our coping skills combined can not calm the storm within. When this occurs, it can be difficult to admit we need help.

This is especially true of caregivers who reach their limits in what they can personally provide. In order to avoid feelings of failure, many will deny they are becoming fatigued and begin pushing themselves even harder. Eventually, continued patterns of lost sleep combined with the emotional drain of being a constant caregiver will take their toll on the strongest of individuals. If you are not careful you may find yourself with little left to give anyone. It is important you protect yourself from caregiver burnout and come to terms with the fact that sooner or later, you will need someone to help you. To ensure you remain healthy emotionally, physically and spiritually when acting in the role of the primary caregiver for someone with Alzheimer’s disease, you will also need to give yourself “permission” to take time for yourself when needed. You may find someone in the family who can give you scheduled breaks or hire a caregiver from a reputable agency if family is not an option.

An additional measure caregivers should consider to help take care of themselves is to join an Alzheimer’s support group as previously recommended. You are not alone in the journey you are traveling and sharing your journey with others who understand and relate to your specific situation can be very comforting. You may also discover that by sharing your story you are able to help others experiencing the same emotions, obstacles and challenges that you are. Support groups typically offer information regarding community resources and ongoing educational opportunities related to the care of Alzheimer’s disease. Your local chapter of the Alzheimer’s Association is an excellent resource to help identify relevant groups in your area.

Establishing a care routine that supports a healthy and therapeutic environment is equally beneficial for the caregiver and the patient. Studies indicate this type of structure helps to slow the progression of the disease. It also helps to maximize opportunities for successful interactions thus decreasing care related stress. You may find it useful to create a written plan of your daily routine and schedule, placing it in a common area for all to see such as on the refrigerator. The care plan should outline all tasks involved throughout the day including the time the individual usually wakes up, eats their meals, takes a nap, etc. Include at least one cognitive, physical and spiritual activity daily to be conducted at consistent times and sequence each day. A schedule for toileting every two hours while awake, complemented by hydration every two hours, to ensure appropriate bowel and bladder functions are maintained would be necessary for a successful care plan. Another benefit of a written care plan is that it provides information for others to follow when you need a break. By providing the same care at the same time and the same way you do, respite caregivers will be better prepared to meet the patient’s needs with a higher degree of success. When preparing a plan of care, consider the following recommendations, some of which have been made in previous chapters but are summarized again below:

1. Are there any “triggers” that you know upset them? If so, be sure to note what the triggers are. For example: If you know your loved one will get out of bed if the light is turned off, it would be important to note this in the “bedtime” section of your care plan.

2. Consider the routine your loved one has followed for most of their life, particularly in the ages of late teens to early thirties, when identifying what time you will assign to any item. It is unlikely they will adjust to a schedule they are not familiar with. For example: If your mother never got out of bed before 10AM, do not think you will be successful trying to get her up at 8AM.

3. Become familiar as possible with what was going on in your loved one’s life in the early adult years as these are the memories that are usually part of their “today reality.” Use this information in the notes sections to flag activities that your loved one will most relate to. For example: A schoolteacher may enjoy “grading” math papers, a housewife may enjoy “folding laundry” and a farmer may enjoy “planning the garden” by the almanac.

4. Prepare a memory box of items that holds the special memories your loved one still relates to. This box can be used to re-direct your loved one when they exhibit behaviors that are hard to control. Appropriate items may include: Old photos from their early adult period of people who were most important in their life, tools or items used in their work environment, items that you can find at the thrift store that were used in the period wherein they were a young adult, etc. Remember that the best way for the caregiver to find R & R (rest and relaxation) is to provide R & R (redirection and reminiscing).

6. Provide recreational activities that compliment the individual’s personal interests and hobbies. If someone enjoyed word puzzles, find easy level puzzles to solve. If someone enjoyed being outdoors, assist them to plant a container garden. If music was appreciated, provide the type of music they most enjoyed and sing along with them to their favorite song.

7. The key in regards to what type of activities to list will be to meet them where they are. This requires some trial and error to find what they will respond to most readily and can accomplish successfully without being frustrated. Remember to provide opportunities for success throughout the day. It may be as simple as helping to fold wash cloths, spreading peanut butter on the bread for sandwiches, or holding your hand. When tasks such as these are completed it has a positive effect on self esteem and individual motivation.

8. Inspect your home for “hazards” including liquids, chemicals, medications, or other items that could be ingested and make certain they are in secured areas out of your loved one’s reach. A bottle of Clorox could resemble a gallon of milk to a patient with dementia. You can never be too safe! An additional concern is to determine if wandering or exit seeking behaviors are present. If so, continuous supervision will be required or you may consider facility care to ensure safety.

9. Place written signs when needed to assist with verbal cuing to help your loved one find their way to places such as the bathroom. This can be particularly helpful when the patient begins urinating in inappropriate places, such as a closet that is mistakenly identified as an outhouse.

10. Remember that as the disease progresses, your loved one’s needs will change. It is likely you will need to adjust the activities as time goes on in order to accommodate a successful outcome. DO NOT allow yourself to climb upon the “guilt train” if you find the burden of care is more than you can continue to provide in the home setting. Placing someone with Alzheimer’s disease in a specialized program when they are no longer safe to live at home is an act of love rather than abandonment.

We all have mentors in our life…someone who teaches us the ropes and takes us under their wings until we can fly on our own. For me, it was Ms. Eleanor. She was a nurse who inspired us all to give more, do better, and be proud of our profession. She was also the person who helped me learn not to take myself so seriously and let go of the small stuff, something I was not very good at before meeting Ms. Eleanor. I was delighted years ago, when upon her retirement from the home health company we both worked for, to be the one who presented her with our parting gift; a pearl necklace thanking her for all the “pearls of wisdom” she had shared with us over the years.

Imagine my surprise when I saw her name listed as a new admission into one of the assisted living memory care programs that I work with. Could it be my Ms. Eleanor was now a victim of Alzheimer’s disease? I was hopeful that if it were her, she would remember me. In fact, I was sure she would. We had been very close once upon a time.

It did not take long to find out it was my dear, sweet Ms. Eleanor. She was near the end stages of the disease and had lost the ability to verbally communicate effectively as well as walk safely. When I first saw her, I barely recognized her. She was sitting in her wheelchair with a blank expression, staring off into space, oblivious to the world around her. I bent down beside her and told her who I was. She nodded her head slightly in acknowledgement but there was no sign of recognition in her eyes. I was not fortunate enough to have known her in her younger days and it was hard for me to acknowledge that I was among the forgotten in her life.

I wanted so much to walk down memory lane with my old friend and talk about the good old days, the office pranks and the dreams she inspired within me. Yet I knew the only way to reach Ms. Eleanor was to go deeper into her memories to a time prior to my existence in her life. Taking her hand into mine, I began to talk to her of what I knew of her life, focusing on her husband that she bragged about to all of us, her children, and her early career as a mental health nurse. While sharing stories I had heard about her yesterdays I could see a light of recognition growing in her eyes. She began to show interest and her focus changed from gazing into space to looking directly at me, especially when I mentioned the names of the co-workers she worked closely with for many years. At first she gave only occasional nods, but that soon gave way to emphatic short sentences such as, “Yes!” and “We had fun!” Eventually I was able to see her wearing the beautiful smile that she was once famous for. Now she looked like Ms. Eleanor and it felt so good inside to be able to visit with her and see her personality come through. Had I remained selfish and tried to bring out a memory that we had personally shared, I would not have been able to experience the Ms. Eleanor I knew and loved.

There are millions of people throughout the world who carry the emotionally heavy and physically challenging title of Alzheimer’s caregiver. It is a difficult journey to navigate, filled with many rocks and detours along the way. The paths must be chosen carefully as we know the impact of our choices can make the difference between success and failure on any given day. Celebrate the good days. Comfort one another on the bad days. And continuously seek to “Meet me where I am” while you enjoy your loved one to the fullest extent possible, helping them to reach their full potential with each day that passes. Together, we can make a difference as we learn, understand and give the best of our best while caring for those with Alzheimer’s disease.